Be an engaged patient if you want to win against your chronic disease.

Or so people keep telling me.

When I hear people say patients need to speak up, be assertive, get engaged, I want to scream. I grant you there are patients who are quiet, but have you ever considered they might be frightened, overwhelmed, in pain?

Here’s the thing: I like to win. I like the challenge. We are not talking about just a game or a series of battles. This is my life. This is the quality and length of my life. I’m not offended that my health is relegated to a series of battles so much as the smug, righteous, dismissive, know-it-all attitude I encounter time and again.

As if dealing with a chronic disease weren’t enough … but I digress.

It is not helpful to tell me to be more active, eat better, sleep regularly.

It is not helpful to tell me to try to take fewer painkillers, more natural supplements, or mediate.

It is not helpful to tell me to be more assertive, more knowledgeable, more engaged.

It’s not like I didn’t have a life before my diagnosis. It’s not like I didn’t gain experiences, education, or know how to stand up for myself before my diagnosis. It’s not like I suddenly have nothing to draw upon other than the advice of people who enjoy healthy privilege and yet are so quick to tell me how to do this engagement properly.

You, the healthy privileged (those not living with a chronic disease) certainly don’t get to chide me to be more engaged as a patient.

First off, you don’t get to do any chiding at all. There’s more than enough blame, shame, and loss of dignity as a chronic disease patient. We get blamed for not taking our meds even though they make us sick. We get shamed for not getting out of bed to exercise even though we can’t stand up without falling over. We take body blows to our dignity every time someone sees what our disease has done to our bodies, our minds, our sense of self.

Second, you don’t get to give me a list of what I need to be doing if I really want to help myself. I get that some experts have a wealth of experience and education that can help. But that’s the key here … help … not fix … not be the only voice of wisdom and experience. We are individuals, not a general statistic. We are not a single course of presenting of disease, treatment, or anything at all.

But most importantly, you don’t get to tell me what it takes to be engaged.

There’s a reason we are quiet …

There’s a reason we are reluctant to ask our questions …

There’s a reason we are slow in answering your questions…

Fear. Shame. Doubt. Pain.

What would we be frightened of or overwhelmed about? It’s a long list … the diagnosis, the prognosis, the changes, the loss of friends, the next surgery, pain that will come back … even speaking up and losing access to a specialist because we have dared to challenge their authority, had the temerity to disagree, or demanded to know more or have further discussion.

And don’t underestimate the chronic pain … ask anyone that’s had a kidney stone .. now imagine that level of pain over and over … at any time … for as long as you live. If you’re not afraid of that … tell me how you do it.

Consider this: We get ourselves out of bed. We get ourselves to the specialist. We wait in a crowded, uncomfortable, germ-infested waiting room sometimes for hours. We get told we can only speak to the specialist for a few minutes and on a single issue. We get asked repeatedly for the same information every visit … sometimes twice in the same visit. We get told to do what is good for us because the specialist knows best … based on their experience and not nearly enough time with us, the individual.

Fact is, we don’t get a lot of time to be engaged. We don’t get a lot of time to do anything with the sheer volume of information thrown at us with very little time to absorb, let alone ask questions. We don’t get a lot of time before we have to start the whole process of going to yet another expert … another long wait …

I have no trouble taking the time and expending the energy to describe what is going on with me to my healthcare team, but I will not be quiet when I am ignored, dismissed, or mistreated.

I have no trouble taking responsibility for my disease, but I will not take the blame, shame, or loss of dignity without pushing back.

Remember, until you walk in another person’s shoes you will not see it from their perspective, not really. Telling patients to be more engaged does not absolve anyone from the responsibility of stepping up and hearing what patients really think about engagement, what they really need to be engaged, or what they really need at that moment.

At this point in my life, I still enjoy playing to win. I am by no means done. I am, however, angry, frustrated, disappointed, and not willing to stay quiet about anyone telling patients they need to be more engaged if they want things to be better, or even if they want to be helped at all.

It’s not about giving me better information … it’s about using the information you already have available.

It’s not about getting me better tools … it’s about asking me what I need before you build it.

It’s not about telling me what I need to do to be engaged … it’s about using the level of engagement that I am capable of at the time you see me.

And from reading an article in BioMedCentral, the benefits are stunning. Empathy is shown to “reduce patient pain, lower patient anxiety, increase patient satisfaction, increase medication adherence” according to this meta-analysis of patient surveys.

From this patient’s perspective, expressions of empathy are few and far between and I have to ask why.

It got me thinking about a recent experience.

Before I could be released after my latest surgery, I had to prove all the plumbing still worked, so my recovery nurse came along to get me moving. She kept encouraging me with words and her firm, yet gentle, hands. However, telling me I likely had to go when I wasn’t even sure I could, made me worry a little. What did she know I didn’t?

With assistance I was able to sit up. I was understandably dizzy and more than a little nauseous. I say that and yet I remember how surprised I was at the time. Later, when I was being discharged my nurse explained it was because my blood pressure kept dropping dramatically. At the time, I just wondered why the room kept going dark.

I made it to a sitting position at last. We carefully began to swing my legs to the edge of the bed. It looked a long way down. I couldn’t imagine doing it alone. Good news, my nurse was right there helping me as with agonizingly slow and deliberate movements I lowered myself to the floor.

That’s when my nurse tilted her head and told me I was short … just like her.

I probably would have been more amused if I wasn’t so concerned that I couldn’t feel my feet or really anything below my waist.

I realize she was merely following protocol. In fact, I trusted that she was so I did what she asked of me even if I only heard half of what she was saying … I think I understood less than half of what she was saying.

Still, we made it to the bathroom and she helped me sit down. That’s when she looked me over again and pronounced my feet didn’t touch the floor. It was a true statement but it’s what she meant by it. You see, it’s awkward and uncomfortable with your feet dangling in the air. It wasn’t just my feet I couldn’t feel if you get what I mean …

Here’s the thing: The moment my nurse found something in common with me that had nothing to do with me as a patient and everything to do with me as a person, it changed our interaction. She was able to appreciate and anticipate both challenges and concerns on an individual level. When she brought what we had in common to me as her patient, she was not only more empathetic to my situation, she gave me the care I felt I really needed at that time.

Do I believe she knew what she was doing? Of course.

Do I believe she would provide all her patients with equal care and attention? Of course.

At the same time, when my nurse took the protocol she was trained to use and realized a pragmatic way in which to apply it to me, the individual patient at that time and place, it changed everything for me. Because I believed she really understood my perspective I felt safer, more cared for, and had an easier time in my recovery … all because she saw the world a little like I did.

Why did I feel this way?

Because when she saw my feet dangling in the air she realized how much more difficult it would be to make that plumbing work. And she knew very well if I couldn’t use it, I couldn’t go home … something we were both motivated to make happen.

My level of trust in her care for me increased dramatically when she removed the commode so my feet rested on the cold floor. Well, to be honest, she said it was cold but I still couldn’t really tell. But I took her word for it.

It also made me realize how many points we did not connect on.

We often hear words like “we are all patients” or “I understand how you feel as a patient because my parent went through the same” or “I have read all about this and went to school to study it”.

I am a chronic disease patient and I am telling you … no … this is not something you can get second hand. However, that doesn’t mean we can’t let you in on this perspective. I think the starting point is finding the things we do have in common … like my recovery nurse did.

Why is this so important?

Again, I can answer that quite simply: If your words aren’t believed, aren’t trusted, are regarded as “merely words”, we aren’t really connecting. Without this connection, without genuine communication, we can hardly have a meaningful exchange. All of which leads to, at least a perception of, less quality care and quality of life.

Here’s the thing: It’s all about trust. As a patient, I am asked to trust a lot. My care team expects me to trust they are doing what they can, that when they do miss something (because it happens), they will correct it and let me know as soon as possible. I am expected to trust the drugs, the surgeries, the treatments are the best for me in my situation … all without guarantee they really are the best for me.

With all this trust happening on my side of the exchange, it is always that much more pleasant when I feel there is genuine understanding of who I am as a patient on the part of my care team. That rarely comes from words. That comes from finding genuine commonality. Proof … if you will … that there is shared experience and understanding, and yes, even respect. Who wouldn’t want that?

Even with the connection my nurse made with me there were still so many ways in which she didn’t see my perspective. From the first I couldn’t understand why things kept going dark. I was passing out but didn’t know why … was this normal, should I be concerned? I couldn’t feel my feet, or well anything much waist down … how was I supposed to respond when she said I should be requiring the bathroom? Far as I was concerned, I didn’t think I would ever again.

It used to be when we wanted something we’d ask how bad we wanted it. We’d either shrug and say not worth the effort or dig in deep and put everything we had into achieving that goal. It’s not like I don’t still ask myself that, but I’m wondering if I’m asking the same question anymore.

Here’s the thing: I’m a chronic disease patient but it’s not that I don’t still want things out of my reach … I’m an over-achiever so that isn’t going to change.

It’s not that I don’t still want things period … I’m not done with living so that isn’t going to change.

And, it’s not that I can’t martial the energy, determination, and assorted resources to put towards achieving a lofty goal … I’m older, wiser, and let’s not forget stubborn so that isn’t going to change.

So why do I hesitate when asked how bad do I want something?

Maybe it’s an appreciation for what it takes to get what I want. Maybe it’s a wary respect for the effort the interruptions, wrong turns, and setbacks demand … or blood, sweat, and tears … that’s required. Trust me, it’s all that.

Or, maybe just getting out of bed is the biggest thing on my list that day.

Yes, how bad do I want it has a new meaning.

And there’s the rub … it’s not just a matter, anymore, of how bad do I want it. Believe me, I want it bad. It’s the despair, weariness, and sheer frustration I have to wade through in order to get what I want.

Case in point: After multiple post-surgical complications I’m finally at what is called “as good as it gets”. I’ve been given the green light to resume my prior pharmaceutical regime which includes a weekly dose of methotrexate. And, I’m able to take on most of the mental and physical activities I enjoy (and those that I’m just supposed to do whether I enjoy or not).

All seems great.

But, I get tired more easily. I have recurring infections at the incision sites. I can’t seem to stay focused like I used to … And that’s just the way it is … I’m not complaining and I’m not looking for sympathy. What I am hoping is to share how it feels to be a chronic disease patient.

Every time there’s another complication …

Every time there’s another surgery …

Every time there’s another something we need to deal with …

Which brings me to the question: What do I want? Simply put, I want to do as much as I can, for as long as I can. My healthcare team is always eager to help me with this goal. They are full of advice. Most of it’s good. Some of it’s solicited.

I know I need to be active. I know I need to stretch my comfort zone. I know I can’t just give in to doing nothing. Just understand, appreciate, and respect that there will be days when it looks like all that gets tossed out the window.

Be careful how you throw down that gauntlet of how bad I want something …

I ask you to consider what you’re asking of me. It’s not just dig deeper. It’s not just keep moving forward. Okay, maybe it is those things, but it’s also understanding just how deep the quicksand is on days when getting out of bed is top of my to-do list.

By all means, keep asking me the tough questions. Keep pushing me just like anyone that enjoys healthy privilege. Just remember, it’s hard to answer how bad I want something when I’m not really sure what it is going to take .. or what I have to give.

It doesn’t mean I can’t do things. It just means if I don’t take into consideration all the things that I have to deal with, I will fail. And, for this over-achieving, stubborn, live til you die chronic disease patient, I like to win. There’s no reason I can’t win. I just have to be clear about what that means.

Here’s what’s clear: Just because some days it doesn’t look like I want much, or am doing much, or even that I’ve changed my mind about what I want … believe me, I know what I want and I want it bad.

I admit it. I was unprepared for a busy weekend with coffee drinkers. And so, I found myself waiting in line to get more.

Now, waiting in line isn’t my favorite activity. Hearing there’s a problem with the service isn’t any better. Hearing someone take a strip off the person trying to deal with it is just too much. It got me to thinking … once I had my coffee … just as there are different types of people and reactions, there is a depth to complaining I had to explore.

Here’s the thing: I get it that sometimes we just keep our mouth shut and put up with it and sometimes we lose it and even over react. But, I look at complaining as a tool that should be used with purpose, intent, thought. Complaining can elicit change in circumstance. Used at the appropriate time, complaining can facilitate better communication. And, with or without forethought, complaining can let off a little of the pain, fear, and sense of being overwhelmed.

Complaining takes many forms.

Sometimes, I complain to share how I’m feeling, to explore what I’m feeling, and to get help from others because of how I’m feeling.

Sometimes, I complain with resolve because I need to be heard. Sometimes I complain with anger or disgust because I need a target other than me. And, sometimes, I complain with hopelessness, much like a cry for help because I am overwhelmed.

Some people complain often, while others rarely. Some people complain loudly and obnoxiously, while others quietly as though they are asking permission to do so.

We complain when we are upset about something.

We complain when we want something to change.

We complain when we don’t know what else to do.

With all this complaining going on around us how do we respond? When do we pay attention? Who do we pay attention to? To what end?

All of which brings me back to my coffee moment. The customer that complained loudly, obnoxiously, and excessively all the way out the door probably wasn’t any happier for having done so, right?

I would never take away someone’s right to complain, but I ask you to consider three things.

One, consider, from your perspective, why you’re complaining, what you want, and if you’re going to feel it was worth it. Yes, we all blow our top on occasion and even sometimes feel better for it. If that’s what you have to do, fine, but then own it, admit it when you look back on it. In other words, evaluate what happened, your response to it, and any results / consequences. That’s how we learn what works and what doesn’t.

Two, consider, from your perspective, when someone is complaining why they are doing it, what they want or need, and if you can help. That’s right … sometimes someone else is doing the complaining … sometimes at us. It’s difficult not to get defensive, but you can learn a lot by taking a breath and just listening to what the other person has to say or what they are experiencing from their perspective. Who knows? Maybe as a result there’s better communication and change for the better.

Three, no matter what never be afraid to speak up, complain, make a fuss. We’ve all been there. Get along. Play nice. Don’t rock the boat. Okay, sometimes we need to do those things and sometimes we need to say enough is enough. There will always be times we look back and admit we should have thought something through a little more. But, I’d rather live with those moments than the ones where I say I should have said something that needed to be said. We can’t count on someone else always speaking up for us.

Yes, there are times we roll our eyes because someone is loud, obnoxious, seemingly unreasonable. But, for me, I see all too often the times when people do not speak up. To me, being labeled a complainer, a rebel, a rabble-rouser is not so bad … just pick your battles.

If focus is defined as the center of interest or activity then I’m all about the focus.

My life is a balancing act between too much focus and not enough focus. As if that’s not enough of a challenge, as a chronic pain patient I often become so focused on one thing that everything else disappears.

Sometimes that pain is so bad it’s all I can focus on. I can’t and don’t focus on anything else. I’m angry at everything, including myself, because I can’t do anything but be about the pain. And, when the pain lessens, and after the initial relief subsides, I look around and see the damage that pain … and my ultra-focus and non-focus … has wreaked on my world.

I’ll be honest, I don’t always know what to focus on. I don’t always know when to focus on something and when to stop. And, there are times I don’t have the wherewithal to focus on anything at all.

I’m often told to focus on what I can do; don’t focus on the pain.

I’m often told to focus on the positive; don’t focus on where my disease is going to take me.

I’m often told to focus on what we are going to do next to manage pain and hold off further damage; don’t focus on what damage is being done to my body and organs every day.

It seems as though everyone has a different idea about what I should focus on; what I shouldn’t focus on. Fair enough, because I have a definite idea about what should be focused on and what shouldn’t.

Case in point: Am I too focused when I’m concerned about whether the red, puffy incision sites from my surgery are looking worse? Am I not focused enough because I didn’t wipe off one of the incision sites after a shower? Did I lose focus too soon? Am I focused too much on how the sites are healing?

Case in point: Am I too focused on whether the physician is paying appropriate and adequate attention to my current concern? Am I not focused enough on the fact that the physician is actually taking notes while I am speaking? Did I focus on the wrong things, not enough things, or what?

Case in point: Am I too focused on being a patient that other parts of my life haven’t had any attention in quite a while? Am I not focused enough because I just can’t seem to get a handle on all the moving parts of my health portfolio?

Here’s the thing: Focus is all a matter of perspective … and it’s always a good idea to consider the other person’s perspective. You could say what is too much focus for one person or situation is just the right amount for another. You could say I have a right to determine the amount of focus I place on anything to do with me. Consider, however, that sometimes what I’m really interested is not paying more or less focus on something, but rather, asking someone else if it is the correct amount of focus.

When I asked about my incision sites, I was told what to look for, when to be concerned, and what to do about it. I had a checklist. I had a plan. It gave me peace of mind so I could focus on other things. Sometimes, that’s all I need … a clear idea of what I should be looking for.

Remember, there’s always a reason for my focus … often it’s pain, fear, a missing piece of information. With fulsome, meaningful, and respectful consideration I can have the kind of conversation with my care team that ensures we are all focused on the best thing at the right time … maybe even at the same time ….

In order to be thorough (and who doesn’t want their physician to be thorough) I was instructed to remove all my clothing (except my underwear) and don a gown (why call it that when it really isn’t). As I moved to do so, I observed a floor to ceiling window facing the park outside. There was a cyclist speeding along the path and a small group of people out for a walk.

I resisted the perverse urge to wave.

Returning to my task, I folded my clothes neatly. Seeing no stool available, I resigned myself to an awkward boosting of myself onto the table via one foot on the chair. And then I resigned to wait, only to realize it was indeed very cool in the room.

At last my dermatologist arrived. As a skin specialist and because this was the first time we had seen one another, she wanted to see my skin … from scalp to toes … and so she did, moving my gown as needed in order to conduct the examination.

That over with, she sat at her computer and began to make notes of her findings, asking me questions. Actually, the first question was where was all of my information? You know … the information my referring physician was supposed to have forwarded to her. Without missing a beat she began to pepper me with questions.

Problem was the information she wanted was on my phone … in my purse … across the room.

Now, I know it wasn’t far, but the table was high enough I couldn’t get down easily, and I know she had already seen me during the examination, and I know I had already made peace with the folks outside, but I hesitated. This was just one too many indignity for one morning.

Was it merely unfortunate there was a window without covering, the room was cold, the table too high, and the gown too un-gown-like?

Was it merely too far-fetched technology has not advanced to the point where a physical examination doesn’t require clothing removal?

Was it merely inconvenient my personal health information had to be repeated, yet again?

It’s ironic that the reason I was at the appointment was less important than what I learned about how I can be treated as a patient and as a human being. I left my appointment feeling I could have been treated not just a patient that must be examined, but as a human being who must be interacted with …

Here’s the thing: As a patient we are stripped of our power, our dignity, our choice, often through no fault of our own other than we require the services of a healthcare professional.

Where is the power, the sense of control, strength, and knowledge?

Where is the dignity, the sense of respect, worth, and esteem?

Where is the choice, the sense of alternate possibilities, options, and outcomes?

I don’t know what new affliction this is; it’s why I’m there to see the physician. I lack the ability to figure out what is wrong and how to fix it. However, I do know there is something wrong … so listen when I speak.

I don’t know why you don’t have all my health information already; there seems to be enough people and systems with who I’ve shared that information. I lack the ability to figure out how to get the information to everyone without having to repeat it each and every time … that is, information that is so basic and yet so difficult for a patient to remember and repeat when we are in pain, scared, and uncomfortable.

I don’t understand why the place I go to get help has to be so uncomfortable, intimidating, and degrading. I lack the ability to do much about any of this except to say loudly and often that there is a list of areas that could use improvement … warmer room, privacy, adequate “gown”, safe access to examination table, and access to my information, just to name a few.

Consider that, very often, as a patient, I am seen if not at my worst, certainly not my best when I walk through your doors. I am vulnerable. I am asking for help. As a healthcare professional, you have something I need, something I can’t easily get anywhere else … and we both know it.

When I haven’t posted anything for a few weeks, there’s always a reason. It’s not likely I lost interest. It’s not likely I have nothing to say. It is most likely some facet of my health has consumed all focus, all energy, all everything just like a black hole.

Sometimes, rather than being a positive force, having such focus is like being lost …

I lose track of time. I lose track of what’s going on around me. I lose track of everything, everyone … even me.

I’ve been encouraged in the past to share my perspective of this journey of being a chronic disease patient with all its ups and downs as it happens. I have resisted quietly … and not so quietly … from doing so and the reason is maybe not what you’d expect.

It’s certainly not that there aren’t things to share … there’s the dreadful experiences, awkward situations, unbelievable indignities, heartwarming kindness, inspirational grace, and so much more.

It’s certainly not that there aren’t people that want to hear about it … there are many people writing about their experiences as they happen.

And, it’s certainly not that there aren’t people that need to hear about it.

I guess I’m just not certain what I think about some of the experiences as they happen to me. I guess I want a little time to get some perspective. And, I guess I want to keep a little of some of it just for me.

That said: Imagine being transferred to a cold and unbelievably hard table in the operating room, furtively trying to grasp the edges of your flimsy and oh-so inadequate hospital gown. There are several sets of hands on you … people that you likely have only just met and hope like hell know what they’re doing. You’re not sure exactly what they want you to do because several are talking at the same time. It’s like you get tunnel hearing as well as tunnel vision.

Everything is overwhelming and it doesn’t help that you’re shivering when they tell you to stay still.

Could be it’s very cold in the room.

Could be you’ve just emerged from a warm cocoon intended to raise your internal body temperature.

Could be you’re scared as hell because you know you’ve signed up for this and it’s way too late to back out even if you wanted to …

Now, imagine you’re leaning over the edge of that cold, hard table, facing someone you’ve only just met, who is holding you firmly because they are supposed to prevent you from falling off the table. Why would that be a concern? Well, the person behind you, whom you’ve also just met, is giving you a spinal. To make it better, to get access to said spine, the hospital gown is thrown to the sides, giving anyone behind you a great view of said behind. And there goes any semblance of modesty.

There is no dignity.

There is only what needs to get done.

Here’s the thing: I’m not just the patient that shares my perspective and experiences. I’m also the patient that has these experiences … the enduring and the processing of what it means to me.

Was it a positive experience? Was it a negative experience? Was it a necessary evil? Was it possible to improve on the experience? If so, how? I would love to be able to answer these questions, I really would.

And, while I appreciate the opportunity to provide feedback on my experiences by the hospital that treated me, I would prefer the time to process what happened, how I feel about it for good or bad.

With time, I heal. With time, I can think again because I’m not in such pain, nor am I muddled because of pain-killers. With time, I pull all the fragments of conversations, situations, and people that surrounded me and a picture of what happened, how I feel about it, and what I want done about it emerges.

I want a conversation … and that can’t happen without giving me time … time to be me and not the patient that has only just emerged from the operating room.

I will share my experiences, my thoughts, my feedback … the only question is will you listen and what will you do with what I share?